This to report a positive outcome as above - and my thanks to those reporting good results on T3 only. (Paul and Co). Prior to reading about the possibility here I'd not realised that it was an option.
The past 18 months to late 2012 were problematical with several periods of months at a time of quite severe hypo symptoms - tiredness and lethargy, progressing on into stuff like spotty skin, cold hands and feet, low pulse, aches and pains, worsening gout and so on.
This after rock solid stability (if not great energy levels) since a thyroidectomy in 2005.
This I've strongly suspected has been down to recent variability in the potency and/or absorbtion of the major brand of synthetic T4 we get on the state scheme here. It's been reported as an issue elsewhere, but our system denies all.
Switching to generic brands last November greatly improved the situation - I was back to the prior 'normal' within a couple of weeks, and it's been dead stable ever since.
Knowing that my energy levels and my mood are still not what they were pre thyroid troubles (and facing some major work challenges) I decided to trial a higher proportion of T3 - raising the daily dose from 150mcg of T4 and 20mcg of T3 to 50mcg of T4 and 45mcg of T3. These are roughly equivalent doses based on the x4 rule of thumb for estimating the equivalence of T4 and T3 doses - but the latter contains a higher proportion of T3.
I have to say that I've been pleasantly surprised at the result. Two weeks in my energy is much better, I'm waking properly in the morning and my mood is improved. I feel far more lively and pro-active than before. My gout has faded. Even my sight is better - more stable, and somehow brighter.
Next up is to bring my (usually constructive) endo on side and get it prescribed longer term.
Care is needed when making the transition. The half life of T4 is perhaps 7 - 10 days, so if the dose of T3 (which has a half life of perhaps a couple of days) is upped to the nominal replacement value before the T4 has cleared the body there is a real risk of ending up significantly hyperthyroid/over replaced in the first days. i.e. it's advisable to ramp the T3 over about a week. It's presumably vice versa going the other direction.
I'd always known that increasing the amount of T4 I took left me feeling awful, but I'd always somehow presumed that the relatively low proportion of T3 was fine for me - and that my longstanding less than great energy was down to side effects of the auto immune issues/food sensitivities I'd developed over the the many years of undiagnosed hypothyroidism prior to my thyroidectomy in 2005.
It's early days, but it ain't necessarily so it seems.
If I have reservations it's the relatively short half life and more restricted availability of T3. It seems i need to stage the dose of T3 in lots over the second half of the day (a bit of a PIA), and even at that there's some sense of 'falling off the cliff' in the evening. Plus I'm not so sure about reliability of supply in the event of say economic or other turmoil or instability in the system.
I'm wondering at this stage if I dare go the whole hog to T3 only, and if it might deliver further improvement - or if maintaining a fairly minimal 50 mcg of T4 is buying me anything in terms of greater tolerance of any gap in supply that might arise.
Comments appreciated, but my thanks again to the community.
ian
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I have nothing to offer in terms of useful input, but want to say thank you for posting Vajra. It is always interesting to read of the different experiments others are trying in order to obtain what frequently seems to be so elusive to many of us... i.e. replacement therapy that gives us a 'normal' quality of life.
I am glad that the addition of T3 has benfited you. This is an excerpt if you're concerned about the short half-life of T3.
Dr. Lowe: The short time that T3 is in the circulating blood isn’t the limit of its beneficial effects on the body. When T3 binds to T3-receptors on genes, the binding regulates the transcription of mRNAs, and the mRNAs are later translated into proteins. The transcription and translation initiated by the binding of T3 to T3-receptors occur in waves, and these waves far outlast the T3 that started them at the chromosomes. Moreover, the newly synthesized proteins themselves far outlast the transcription and translation. As a result, a single dose of T3 will be long gone from the patient's system before he or she experiences most of the benefits of that dose—a molecular and metabolic yield that may smoothly spread out over one to three days. The "rocky road" ( August 7, 2001
I am very interested in your experiment - thanks for posting Please keep us updated of any further changes/progress. I am on an NDT, but sometimes wonder about the fixed ratio that you get between T4 and T3. Xx
Thanks Vajra for sharing this. I too wonder about that T4/T3 ratio. I wonder that if we are more active or have more physically and mentally demanding jobs that we naturally would need more T3. I often feel that I run out!
Building up the split doses and size of each though is a slow process and needs to be done with care..
Let us know when you hit that sweat spot and share it with us.
Thanks guys, and thanks for the reassurance on the half life of T3 Shaws.
The benefit seems to be becoming clearer with time, although it's early days yet. It so far seems to necessary find the right distribution for the intake over the day though to avoid down periods. Maybe it'll stabilise as it builds up in my system.
TBH I'd prefer to not have to take T3 at all - it gives my GP fits, supply is messy and tenuous because it's not widely used or licensed, and it can't all be taken in one lot - but best foot forward/don't look a gift horse in the mouth and all of that.
I shouldn't over play the improvement. Compared to where I was for many years when seriously hypo I haven't been doing too badly at all since (eventually) getting to a decent replacement regime after the thyroidectomy in 2005. This recent upping of the proportion of T3 has delivered a very nice improvement though - one which I think will be especially helpful with stamina and motivate re. work.
The T3 is Ti Tre Rod, and your memory is correct. There were all sorts of T3 supply problems over the past year - in addition to the suspected variable potency of our synthetic T4 described above. (the T4 was the mainstream UK brand, as was the original supply of T3)
When we last discussed it the Ti Tre had supposedly been 'withdrawn'. That proved only to be the start of a series of mixed messages and ad-hoc T3 supply arrangements. Not sure how much of the problem was with the pharmacy, and how much with the Irish licensing system.
These days they have de-licensed T3 in general and are refusing blood testing to GPs (don't ask me why given its increasing relevance - that's why I have to see an endo to get it prescribed), but Ti Tre is the one that's routinely available. It requires the pharmacy ordering from the importer who charges about x10 the EU price.
We're meanwhile by law not permitted to import supplies - although it's clear I need to find a way around this.
I could go on at length about our Irish 'health' system and whose interests it really looks after, but i'd better not.....
brilliant so pleased for you I wish my Gp and others would read what is written on here. Maybe theyd understand a little more
Great post, thank you. Glad you are seeing improvements; gives the rest of us some hope! Sorry if I've missed this but how are the different brands of T3? Is it like T4 where some fillers affect potency etc.? I'm hoping to get into the realms of combined therapy and have issues with T4 (my pharmacist kindly sorts this for me and actually suggested it might be the issue); so would like to go all informed!
I've been on 20mg of T3 split over 2 doses for about 9 months & my energy levels with it have improved. My thyroxine was increased to 100mg daily from 50mg at Xmas so after the couple of weeks 'usual' improvement things have got worse again over the last couple of months. I've increased the T3 to 20mg in the morning & a further 10mg in the afternoon. I don't know if I should play around with the dose but have certainly felt much clearer headed & even quite lively occasionally !! I've never felt that thyroxine was making any difference & the health professionals don't seem in any sort of rush to help but I will have to read up on taking T3 only as really don't want to make anything worse !!
I've only had two types of T3 Hayface (great name:)) - that's the Ti Tre mentioned and the Goldshield product. The difference is not very marked, but my impression is that the former is marginally more potent and/or gives a 'cleaner burn'. That i just feel a bit brighter and more energetic on it.
That sounds quite like where I was until very recently Halifaxlass - mixing the two hormones, but at a lower T3 dose. There seems to be variability between individuals in terms of the mix that suits us best. Some do fine on T4 only, others T3 only and some with a mix. It's all pretty subjective, in that medicine doesn't even have widely available tests to properly determine whether or not we are hypo at the cellular level - never mind whether or not we are feeling our best.
That's before we talk natural dessicated thyroid which also contains a fairly high level of T3. Some report doing well on it, and some not - perhaps because of this.
I can't advise as I'm no expert (the T3 only approach was new to me until I started reading here), but my personal experience is that it's hard to make progress on replacement without forcing the pace a bit and taking responsibility for yourself - unless that is you are lucky to get a very pro active, capable and experimentally oriented doctor.
T3 needs care, in that it takes effect far more quickly and is x4 or x5 more potent than T4 - it's easy to take too much.
My clear impression is that the system would prefer we all stayed on T4. It's easier to administer, and with TSH represents at least a theoretical possibility of a reduction in the number of blood tests required.
Luckily it seems equally clear that we're making progress. That the very high numbers experiencing problems on T4 alone, and the reports of improvement in those taking T3 are moving the game along.
Endos and the like (some - especially the younger guys - over here anyway) are far more aware of T3, and far more open to the likelihood that (a) secondary hypothyroidism/conversion and use problems are real issues (that some of us produce hormone but don't use it well, and that the stock blood tests don't detect this), and (b) that T3 may (in some cases with additional therapies involving supplements and/or adrenal support as needed) offer a route to improvement.
Back when I started reading and pushing the issue with near retirement age doctors first in the mid 90s it was a very different world.
I've only just started to read it and don't know a lot about it yet - but Paul Robinson's (T3Paul) book 'Recovering with T3' is fairly widely available and may be a good place to start gathering information and an overview on the topic.
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